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CHfather last won the day on January 15

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About CHfather

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  1. I do, too. I think your neuro's position is ridiculous.
  2. Oh, boy . . . What I'm saying here is just what I know, or think I know. I suppose others might correct me. Percocet just doesn't work for CH. That's a given, though I suppose there are exceptions to every rule. It isn't really effective for migraine, either. No, it is not normal to feel light-headed after using O2. How abnormal it is, I don't know. I don't remember reading about it even once in the past 7 1/2 years, which would include at least 100 conversations with people using O2. Racer1_NC and Batch, among others, know far more about this than I do. You could PM them from the envelope symbol at the top right of the page. If you are hyperventilating, maybe -- but you'd know that. If anything, the low flow rate would seem to make it less likely that you'd have breathing-related issues. Are you having any trouble inhaling? If O2 doesn't work, it would seem to be another sign that you don't have CH, although this might not be a fair test (and, as you say, it's not clear even when you should start on the O2). There's a "symptom checker" at WebMD.com. I looked for sneezing, nausea, and headache. Didn't see anything there that really makes sense. Sorry . . .
  3. Roadie, Hemicrania continua??? https://www.migrainetrust.org/about-migraine/types-of-migraine/other-headache-disorders/hemicrania-continua/
  4. You've heard from two of the very best, Angela. I am only going to clarify that energy "shots" (the small ones of about 2-3 ounces, such as 5-Hour Energy), often have more caffeine than the larger energy "drinks" of about 8-12 ounces, such as Red Bull or Monster. An energy shot is easier to drink down quickly than the larger energy drink. As jon' says, check the labels.
  5. Nothing significant to add to fella's superb response. If phenergan, an anti-histamine, worked for you, it's possible that Benadryl will, too. Recommended dosage is 25mg every 4 hours, and 50mg at night, with the usual warnings about drowsiness. I share fella's doubts about whether you have CH. When you say "Lately they have been lasting about three weeks," do you mean that you have an ongoing severe headache for three weeks, or that you have attacks frequently during a three-week period and then they go away? If you do have CH, strong pain-killers (such as Toradol) are not going to help. The strongest analgesics/opiods don't work. As fella says, oxygen, verapamil, and sumatriptan are the first-line treatments, and maybe some prednisone to perhaps create some painfree time. If you do have CH, it's possible that caffeine will help you (there's some of that, but not enough in Excedrine Migraine). You might try drinking an energy shot, such as 5-Hour Energy, when an attack begins.
  6. Here's one thread about it. You can see more if you type "jesus shot" into the search bar at the top right side of the page (and set it to "all content"): https://clusterbusters.org/forums/topic/4773-the-jesus-shot/#comment-50552
  7. I have to admit that I'm completely confounded by your symptoms and the fact that Percocet helps. I'm not a doctor, and I have no idea what's going on. (CH attacks are almost always one-sided, and it's uncommon but not unheard of for them to be accompanied by an aura.) Regarding oxygen, you should be able to call the supplier who delivered this equipment to you and just ask for a large cylinder of oxygen, a regulator that goes up to at least 15 lpm, and a non-rebreather mask (if that's not what you received). I suppose a lot depends on what prescription the doctor wrote. The supplier might never have had a patient with CH. You can tell them that you'll send them some medical literature related to oxygen for CH. If they say they'll look at that, I can provide it to you. Of course, it concerns me that it made you light-headed. Many oxygen suppliers have a respiratory therapist on staff. That person might or might not know anything about CH. (There was a report a few years back in the medical literature about a person who had "paroxysmal" sneezing attacks after undergoing deep brain stimulation to treat CH, so I suppose that might suggest some relationship, but that's all I know about that.)
  8. Sorry -- NO, it isn't. You should try it, because it might work, or at least help. But in general that flow rate is much too low, and a concentrator doesn't generate pure enough O2. Plus, most concentrators are noisy. You want cylinders/tanks, with regulators. Lordy, this is frustrating. As I noted above, the prescription should have read 15 lpm. (Not frustrated with you, of course, just with this damn crazy system.) Are you sure it's a non-rebreather mask? Does it look more or less like this: https://justnebulizers.com/pediatric-or-adult-non-rebreathing-mask-case-of.html? It's not things you stick in your nose, right? If you have that mask, cover the little circle of round holes, if it doesn't have anything behind it, when you inhale. That's to keep room air from mixing with the O2. Cut the strap. Hold the mask firmly to your face with your hand. Drink a 5-Hour Energy or some strong coffee as you start on the O2. Inhale the oxygen as fully as you can, hold it for a moment, exhale fully, and inhale again. If you have to pause to wait for the bag to fill before you inhale again, your flow rate is too low. There are other breathing strategies you can use, but I'm just giving you the most straightforward one. Let us know how this goes.
  9. jon', it does indeed seem surprising if it's not about the money. Although the costs stated for O2 in some places seem incredibly high, so maybe there is a money factor. And maybe GlaxoSmithKline and the other triptan sellers lobbied hard for their stuff to be all that was available for aborting.
  10. "Expert Opinion: Coverage Gaps Leave Cluster Headache Undertreated" http://www.neurologyadvisor.com/migraine-and-headache/cluster-headache-oxygen-therapy-coverage/article/700033/ Promising that this is getting coverage within the medical community.
  11. Seems that more clinical trials are being undertaken, which will be completed this year, after which the company can request FDA approval. Unfortunately, this is an injection that has to be administered in a doctor's office, so it might take a very adventurous doc to try it for CH (although I guess studies of the effects of ketamine on CH might encourage this "off label" use). Pills are supposed to be available not long afterward, though. Seems like there are also some other ways of delivering ketamine being looking into, also. See "United States" on this page.
  12. A prescription will typically read something like "Oxygen therapy for cluster headache. 25 min at 15 L/min with non-rebreather mask." ("L/min" is liters per minute). A doctor might use some abbreviations ("NRB" for non-rebreather, for example) but I'm sure they're not necessary. If you could get him to write it for 25 L/min instead of 15 L/min, that would be great, but it would be pushing it.
  13. Vitamin D level is usually included in standard blood panel. If you're going to use those sumatriptan injectors, be sure to read the file "Extending Imitrex" in the ClusterBuster Files section (it's on the second page, I think). Virtually everyone can get by with less than 6 mg. For some, 2mg is sufficient; 3 works for pretty much everyone. The Facebook group that the doctor mentions is "Cluster headaches." I'm giving you the specific name because there are other CH groups at FB that are suspect to some of us.
  14. Richard. The course of CH is unpredictable. Some people have long remissions, and some get "worse." However, with proper treatment, the "worse" can be managed so it's certainly not nearly as bad as what you've been going through -- and there is significant hope for effective preventives on the medical horizon. There are two categories of treatments, preventives and abortives. What works as an abortive is, first and foremost, oxygen. Effective; no side effects. You want a prescription for high-flow O2 (at least 15 liters per minute) with a non-rebreather mask. Oxygen in cylinders, not from a concentrator. Sumatriptan virtually always works as an abortive. If nasal spray didn't work for you, injections almost certainly will. Significant side effects, but it does stop an attack. As a preventive, I'm going to say that the vitamin D3 regimen is the best way to go. Good for you as well as being effective. Read about it in the ClusterBuster Files section. Verapamil can be effective, but many people need dosages that are higher than what most doctors know to prescribe: up to 960 mg/day. This level has to be gradually worked up to. There are a lot of other things that will help you, such as rapidly drinking an energy shot such as 5-Hour Energy at the first sign of an attack. Read around more (I know it's a pain, but you'll learn a lot) and you'll see other things that help (ice water, melatonin, Benadryl, ...). But from a doctor, what you want are an O2 prescription, verapamil, and sumatriptan/Imitrex. You might not use the verap and the trex (and the trex is frightfully expensive), but it's good to have the scripts. This site was founded by people who discovered that psychedelic substances, often taken at a sub-psychedelic level, will very often end cycles and might prevent future cycles. You can read more about that in the numbered files in the ClusterBuster Files section.
  15. blue, Follow the advice of Batch and Denny and it'll get you going in a very good direction. I remember at a conference some years ago a small woman, maybe 5 feet tall, maybe 100 pounds, who could use O2 faster than a 60 lpm setup could provide it. (Her screen name, for those who go way back, was Tingeling, which means Tinkerbell in Norwegian.) I think Batch's method should work for you, because it's not dependent on flow rates (see this post), and I would think a demand valve would also work. MrGeeney will know, I'm sure -- and just as important, he's likely to care about making sure you get what you need.